HÉLÈNE VILLARS1,2, PHILIPPE GIRARD1
1. Toulouse University Hospital, Department of Geriatric Medicine, F-31059, Toulouse France; 2. Inserm 1027, University of Toulouse III, F-31073, Toulouse France
Corresponding to: Dr Hélène Villars, Toulouse University Hospital, Department of Geriatric Medicine, Pavillon Albarède Place Baylac 31300 Toulouse, Fax: 00.33.5.61.77.64.86 Phone: 00.33.5.61.77.64 55, E-mail: villars.h@chu-toulouse.fr
Care Weekly 2018;2:9-13
Published online November 5, 2018, http://dx.doi.org/10.14283/cw.2018.7
Abstract
Psychoeducational approaches such as Therapeutic patient education (TPE) have increased substantially in the field of Alzheimer’s disease. There is evidence to think they can be useful for both patients and caregivers. Such approaches, addressing the patient and the caregiver’s needs, have to be designed in keeping the challenges of the dyad (patient/caregiver) in mind. This article summarize the most important results in the literature, as regards the impact of psychoeducational interventions as TPE on caregivers ’outcomes (stress, well-being, health in general) but also patient’s outcomes (quality of life, behaviour). Person-centered and tailored informations delivered to caregivers by specifically trained professionals using pedagogic methods and innovative tools, could improve the quality of care delivered to AD patients. TPE seems to have a place in an integrated care type of approach for AD patient’s and caregivers.
Key words: Therapeutic education, Alzheimer’s disease, caregiving, non-pharmacological interventions, person-centered approach, quality of life.
Introduction
Psychoeducational interventions for caregivers of patients affected with Alzheimer’s disease (AD) have increased substantially for almost two decades (1-12). During this time, educational programs and behavioral interventions targeting the cognitively impaired subjects themselves have also flourished (13-16). Currently, some authors consider that the dyad (patient/caregiver) is the ‘real beneficiary’ of these approaches (17, 18). During the course of AD each dyad experiences changes and, unfortunately a decline in the quality of interpersonal relationships in most instances. Therefore, each dyad can be considered as having its own challenges. In our opinion, there is a need to design and evaluate intervention programs with the challenges of the dyad in mind.
Place of Therapeutic Patient and Caregiver Education in Alzheimer’s Disease
In this field, therapeutic patient education (TPE) can bring part of a solution by considering the dyad as the real “patient” -as a concept- and targeting their unique needs. Therapeutic patient education (TPE) is a basic, lasting component of patient management, according to the World Health Organisation definition (WHO) (19). It was developed in the field of diabetes management in the early 1980s, and has shown its efficiency in many chronic diseases. TPE covers organized activities designed to make patients and their relatives fully aware about their disease. TPE helps patients and their relatives acquire or maintain the skills they need to manage their life with a chronic disease. It focuses on empowering the subject and his or her family to find the resources, to cope with the consequences of the disease in their life. The content is individually tailored, based on pedagogic methods and tools, performed by a multidisciplinary team of health professionals, specifically trained. Tools are represented by, for example, storytelling, drawings, videos, quizzes etc… that allow the professionals to explore the subject’s representations and worries (19-21). It has been demonstrated that this non-pharmacological approach can lead to changes in patient’s lifestyle and behaviors in many chronic diseases. Indeed, the WHO has listed almost 60 chronic conditions in which such an approach can be proposed. In those conditions, studies have shown a positive impact on patients’ self-management behavior, notably on adherence to medication regimen (22) and health behaviors in general (23-25). The efficacy of TPE has been proven to modify behaviors and promote changes in life, for example in diabetes and asthma (26, 27).
Due to the specific characteristics of AD: cognitive impairment, especially memory loss, and anosognosia it has been difficult to implement such programs in the field of AD, initially. The patient’s skills to acquire abilities to modify his/her behaviour were unfortunately supposed to be so far impaired that it constituted a barrier to implementation. For this reason, the caregiver was initially considered as the only beneficiary of TPE programs. In the literature, positive studies with outcomes on caregiver’s physical and mental health started to appear almost 20 years ago. It has been shown that the caregiver’s burden decreases after a psychoeducational intervention and that his or her knowledge, feeling of competence, well-being and quality of life is improved (2). Several studies have demonstrated that such educational programs can improve the caregiver’s quality of life or decrease his/her feeling of depression and burden (4, 8-11).
At the present time some authors consider that the patient, too often excluded from any educative relationship with the physician, also has to be included in this approach. Indeed the diagnosis is increasingly made at an early stage of the disease that allows him/her to be engaged in this type of partnership. Furthermore, from an ethical point of view, there is a need to deliver information and to propose support to the patient him or herself. Only few studies have evaluated the effectiveness of multidimensional psychoeducation interventions on the AD patient him/herself (2, 3, 15, 16) because of the barrier we underlined earlier. The most effective interventions are the multi-dimensional ones, including a formalized psychoeducational program for caregivers associated, as appropriate, to respite, psychological support and / or pharmacological treatment addressed to the patient (17, 18). There is evidence demonstrating that these interventions can reduce patient’s behavioral and psychological symptoms of dementia (BPSD) (17, 18). When therapeutic education is combined with respite care or psychological support, the patient’s quality of life is increased (17). Unfortunately, there are also negative studies. A randomized controlled trial, DAISY, conducted in Denmark, demonstrated that a psychosocial counselling and support program for outpatients with mild Alzheimer’s disease and their primary caregivers induced a small and non-significant improvement of the patient’s depression (13). Cognitive functions and autonomy are unfortunately difficult to improve, as an outcome, in such studies results (13, 14).
Even if there is a current need to involve patients, caregivers are still at the heart of this approach the pivot de la demarche. It is well known for example that TPE programs can modify caregiver’s or relatives’ attitudes. This is not only true in geriatric care but also in pediatric care (28) and psychiatric care (29-31). Indeed by transmitting knowledge, expertise and skills to the relative or to the caregiver, he/she is able to modify his/her behavior with the patient.
Thus, there are reasons to think that the dyad is the beneficiary of psychoeducational approaches. One the one hand, interventions that jointly engage community dwelling people with AD and their caregivers in education and training are the most successful (17). On the other hand, it is known that family caregivers of demented patients benefit from a psychoeducational program more than a “direct” information transfer through the extensive offer of self-help literature (3) in the way they communicate, in their emotional attitude towards the patient and their perceived burden and symptoms of depression (3). TPE addressed to both caregivers and patients seems to be of benefit for each member of the dyad (patient/caregiver). As a matter of fact, this approach has become, recently, one of the components of the care of Alzheimer’s disease (AD) affected patients and their caregivers, in international guidelines (32-34). In France, for example, it is one of the key components of the French national public Health plan 2014 2019 (34).
Even if it is recommended in routine care, there is still a need of additional evidence to strengthen the rationale to implement it more widely. When designing a trial to evaluate the impact of a TPE program on each member of the dyad, some aspects are to be considered carefully.
Concerning the intervention in itself, there are compulsory elements. In existing trials, the content always includes problem-solving techniques and coping strategies, counselling on management of patient’s behaviours and crisis management dealing with role change and obtaining support. A TPE intervention is as much as possible tailored to the individual’s personality, beliefs, needs and requests. The person is led to formulate a project by identifying skills to acquire or to strengthen and by defining realistic goals to reach during the program and afterwards in her/his life with the patient. Indeed tools and methods are defined and validated in TPE (19-21).
The “format” is often standardized in the form of “structured sessions” (for example2h once a week for X number of weeks addressed to caregivers) in small groups of 6 persons but the frequency and the duration is very varied. A few interventions are based on lectures that are less interactive than educational group sessions. Internet-based interventions are a novel format of education and counselling, but also support (4, 35, 36). Some programs are web-based courses, e-learning program or MOOCS. Information and communication technologies (ICT) are nowadays one of the major components of pedagogic activities (36) (computer-based activities and brainstorming, MOOC, chats etc…) now commonly used in health education that are promising in the field of patient education (36). The way information and knowledge is delivered is, in our opinion, an important aspect of the potential effect of this type of intervention. There is evidence leading to think that web-based interventions can be of great value. A recent randomised controlled trial has shown that a web-based learning course increases empathy and understanding of dementia caregivers (35).
The potential limitations are known (accessibility, usability, acceptability), but ICT are now an indispensable tool to be used in TPE, in a shared information and shared decision, integrated care approach.
Concerning the judgement criteria, there is a need to find the most relevant judgement criteria of the impact of TPE on the dyad. The patient’s mood, BPSD, physical health or quality of life could be of great interest. As an example, quality of life is a multidimensional and relevant criterion in the management of chronic diseases, now used in the field of dementia (37). The decline in quality of life at mild stages of the disease is due to cognitive function (38) on which educational interventions have not demonstrated any positive impact (13) but later, those same interventions could have an impact. Depressive mood and polypharmacy are two factors also influencing quality of life in patients with AD (39). To estimate their quality of life, proxy reports are sometimes used introducing bias as the caregiver’s representations might influence the assessment (40-44). It is important to assess both self and caregiver ratings when assessing patients QOL (44). This is true for every judgment criteria heteroevaluated by the caregiver. Caregiver’s stress, mood or feeling of burden are currently the main chosen outcomes (6, 11, 12). The caregiver’s mental load or quality of life have also been studied (10). Finally, dementia’s health related costs are studied. Reducing caregiver’s depression with educational tools for example reduces health costs (45).
Concerning the actual and future place of TPE in dementia care, nowadays, pharmacological treatments, antidementia or antipsychotic drugs are not sufficiently efficient or associated with adverse effects (46, 47). Non-pharmacological therapeutics are thus at the forefront (33, 48, 49). Among them, psychoeducational approaches could become key. Indeed, they are recommended by international guidelines as first line care (32, 33, 48, 49). TPE addressed to the dyad is recommended in the French National plan (34) but we need to consider their generalization at the moment of design in order to make them reproducible, evaluable and cost-effective. Delivering expertise, knowledge, skills and support to caregivers, through psychoeducational approaches is a long and expensive process for which health professionals need to be trained. Nevertheless, from our point of view, this approach needs to be continued because it could lead to better physical and mental health in caregivers, especially for our eldest patients. In many EU countries family members have shouldered the caregiving responsibilities, which can lead to inequalities, for example by taking a member of the family out of the workforce and, lessen his/her economic situation (50). This could also lead to less inequality, as women are often the main caregivers.
Conclusion
In our aging societies, considering the lack of pharmacological treatment in the field of AD and the burden shouldered by caregivers, it can be envisaged that psychoeducational approaches addressed to both patients and caregivers be part of the care plan in AD and even at the heart of an integrated care type of approach. When designing TPE programs we need to keep the challenges of the dyad (patient/caregiver) in mind, that is to say, creating them tailored and person-centered, in an acceptable but also innovative format (ICT), in choosing the way we evaluate their efficiency for each member of the dyad. TPE of the dyad needs to be designed, from the onset, to be feasible in daily care routine, generalizable and cost-effective with sustainability in mind, because of our health care organizations and reimbursement systems, which hadn’t integrated, at their conception, the 21st century longevity rates (51).
Conflict of Interest
None.
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